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“Dear God, thank you for my baby brother, but what I really wanted was a puppy.”

With those words from Children’s Letters to God, Holly Levin Cohn, an associate rabbi at Congregation Ahavath Chesed in Jacksonville, Fla., began a sermon on the “innocent words” of siblings.

“Children can be the means to great wisdom. They often have very literal ways of looking at the world,” Rabbi Cohn observes. “They can be brutally honest. They challenge us to think in new ways when they ask endless questions, many of which are very insightful and many for which we have no answers.”

The Sibling Leadership Network (SLN) seeks to be and sees itself as a provider of some answers for parents and particularly siblings, vexed by questions regarding a disabled child in the family.

Little research
In the U.S., there are millions of siblings of people with disabilities, and “despite the ever-changing roles they will assume in the lives of their siblings with special needs, there is relatively little research on siblings and their concerns.” Stating that, the SLN “investigates resilience, support opportunities, and lifespan choices. We realize the sibling relationship is a two-way street; consequently, we want to explore the sibling relationship from perspectives of sibs with or without disabilities.”

To reach that goal, SLN met in Washington in mid-November for “setting an agenda for advocacy, research, and policy.” SLN observes: “Of any family member, brothers and sisters will likely have the longest-lasting relationship with individuals [with] developmental disabilities. SLN believes siblings with and without disabilities can advocate effectively for policies that will benefit people with disabilities and their families.”

SLN’s Sibling Support Project was designed to allay lifelong concerns of brothers and sisters of people who have special health, developmental, or mental health issues because they “affect the lives of all family members.” The idea is to raise peer support and information opportunities for siblings of people with special needs and to “raise parents’ and providers’ understanding of sibling issues.” SLN’s mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops and listservs for young and adult siblings, and “increasing parents’ and providers’ awareness of siblings’ unique, lifelong, and ever-changing concerns.”

Words into action
The Washington meeting was viewed as a “conversation” among siblings, researchers, service providers, and policymakers. The plan was to translate conversation into action, discuss siblings’ concerns with researchers and policymakers, and learn what research reveals about brothers and sisters.

SLN supporter, the Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTCADD), backs “successful aging of adults with intellectual (mental retardation) and developmental disabilities (I/DD) due to physical, cognitive, and environmental changes. Dr. Tamar Heller, RRTCADD director, contends that “as persons with [IDD] are living longer and their presence in the community increases, there is a growing need for information on ways to support these adults and their families.”

Meanwhile, the University of Michigan Health System (UMHS) contends siblings of special needs children “have special needs themselves. Their special needs sister or brother will get [more] attention. When parents tune in to each child’s needs, they can help ease the difficulties.” UMHS asserts siblings have chances to “develop traits like insight, tolerance, and loyalty.”

No official diagnosis
That statement tugs at the heartstrings of Shelly B. of Orange Park, Fla., who looks to SLN “for support” for her son, Daniel, turning 15 this month. Her other children are daughter Kairstin, 12½, and William, 11 in February. She explains: “We don’t have anyone to go to; we’ve done some things through the University of North Florida, but we wish there was some place to take the other kids where they could be around siblings in the same situation. Sometimes they don’t understand that the reason I might pick up something special for Daniel at the grocery store and not for them is that they go to the movies with their friends and Daniel is stuck at home.”

Shelly explains Daniel’s difficulty has “no official diagnosis; it’s a very rare condition,” a neuro-degeneration where the brain has too much iron. “When a doctor hears that iron is accumulating on part of his brain, [he/she knows] that affects Daniel’s muscles. As iron builds up, it spreads over the basal ganglia” and cerebellum, which modify movement on a minute-to-minute basis. It “takes more muscle control away. As more iron accumulates, his speech gets slurred; he’ll start losing control in his arms.”

She and her husband don’t know Daniel’s prognosis - nor do his doctors. “He was born with it,” Shelly recalls, “but it took five years to accumulate enough to see some differences. His behavior was bad; then, his walking was affected. We didn’t get a diagnosis until he was almost 10, and we had to go to Baltimore to get it. We still don’t know exactly why he got it.”

Daniel had muscle biopsies; “they were fine.” He had bone marrow tests to look for certain histiocytes; “that was fine. The doctors don’t understand why. That’s frustrating. You can see problems in your child and people on the outside say nothing is wrong because the tests come back negative. Just because science hasn’t found it doesn’t mean that nothing is wrong.”

Cater to him
This also makes it rough for Daniel’s siblings. Shelly says, “They handle it pretty well. They’ve always been around Daniel like this, so to them it’s natural. It’s just who Daniel is. They have their fights with him. If Daniel gets upset and throws something, they will go after him and slap him, but they understand that he’s not like them—that he can’t walk and everything. They kind of cater to him a little more.”

Daniel can’t get in his wheelchair and roam around the house. “The kids go over and play games with him and talk with him, just trying to make him feel like he’s part of the family,” Shelly adds. “They have those days with him, but for the most part they do really well. When Daniel could walk, Kairstin would be there with him making sure he didn’t fall, holding his hand since he hasn’t always been in a wheelchair.”

Her son attends a junior high, but in a trainable, mentally handicapped classroom. Instead of getting ready for college, he’s getting ready for a job. “If he’s ever able to have a job, he’ll have the skills he needs to work,” Shelly notes. “They shop for the classroom and pay with their money. It’s the teacher’s money, but they’re responsible for looking for an item, taking it to the cashier, paying for it.”

This year Daniel has a full-time assistant who stays with him. “But he’s learning how to have conversations, he’s learning what money is and how to use it, so he understands more about the community versus learning to read. He can’t read. He can spell his name, but he can’t pick the letters out. He likes to talk to people and be outside when he can.”

Proper focus
Another view comes from Dr. Derenda Timmons Schubert, of Pacific Northwest Children's Services in Portland, Ore. She notes “all sibling relationships have their good and rocky times” and urges parents and siblings to read “Siblings without Rivalry” by Adele Faber and Elaine Mazlish. By doing so, parents get a “down-to-earth approach to managing sibling conflict.” One particular aspect discussed in the book is what you do with sibling rivalry when one of the siblings has a disability. These suggestions are offered: Focus on children's abilities rather than disabilities; encourage abilities; acknowledge all of children's feelings about their siblings with special needs; resist the urge to compare children even when those comparisons involve positive comments; resist the tendency to place children in roles.

Growing up with a disabled sibling can give siblings a “greater richness of experience and better quality of life, bring out positive traits in their characters, help them develop better senses of humor and fairness, and introduce them to the best aspects of inclusive communities,” she adds. These benefits, Schubert maintains, are “less likely to be realized if we don't encourage each of our children to develop their potential in a warm, loving, and safe environment.”

Shelly wants Kairstin and William to meet other kids in the same situation “so they can see what it’s like in other families and other ways to work through issues. They don’t have friends with disabled siblings, so they don’t always know how to cope with it.”

If you’re wondering what Ahavath Chesed means, Rabbi Cohn says it’s Hebrew for “the love of kindness as required by God.” That couldn’t be more fitting when relating how children should deal with disabled siblings.

In his wheelchair in Jacksonville, FL, Herb Drill heads Able Me & Associates. His e-mail address is herbdrill@ableme.com. He has Muscular Dystrophy, and had a similarly disabled sister, Rita.